Collaborative research with stakeholder organizations
This section introduces case studies of collaborative research with multi-stakeholders in the field of rare and intractable diseases (NANBYO) that can be made public. Also, projects and studies for which confidentiality agreements have been signed are not listed. (Last update date: September 25, 2024)
Year 2024
2023-12-27 Held an RDD internship for junior and senior high school students. 【Junior / Senior High school】【RDD】【Study tour】
2024-09-20 Accepted our paper by The Lancet Global Health. 【global community】【research paper】
2024-09-17 Supported a World Patient Safety Day Event Hosted by a Company 【company】【World Patient Safety Day】
2024-09-15 Supported the Public Lecture at the 24th Conference on CRC and Clinical Trials. 【domestic conference】【RDD】【Junior / Senior High school】【planning】
2024-09-15 A digital poster was presented at the 24th Conference on CRC and Clinical Trials. 【domestic conference】【poster presentation】
2024-08-31 Patients with rare diseases and their families from Saga Prefecture were invited to a Sagan Tosu home game. 【RDD】【social】
2024-08-26 Participated in a dialogue session hosted by a company. 【company】【dialogue】
2024-08-19 Organized Study tour for RDD high school students (Osaka Meisei High School) 【Junior / Senior High school】【RDD】【study tour】
2024-07-31 Published the RDD 2024 event report. 【RDD】【report】
2024-07-31 Released the official RDD Japan 2024 movie. 【RDD】【report】
2024-07-30 Released STEP Dialogue Vol.3 on the STEP Learning website. 【STEP】【CMT】
2024-07-27 Supported an Event Hosted by RDD-Participating High School 【Junior / Senior High school】【RDD】【planning】
2024-07-24 Participated in a dialogue session organized by the company. 【company】【dialogue】
2024-07-18 Lectured at an internal seminar of the company. 【company】【invited speaker】
2024-07-11 Participated in the AMED Advisory Board Meeting. 【AMED】【advisory board】
2024-07-07 Supported a patient group initiative. 【Swallowing and feeding disorders】【PG support】
2024-06-30 Supported a patient group initiative. 【FAP】【PG support】
2024-06-28 RDD Satellite Event: An Exchange Meeting with RDD Ambassador and the Saga NANBYO Consultation and Support Center. 【RDD】【social】
2024-06-28 The common template for the Informed Consent Form (ICF), created by JPMA, has been published. 【JPMA】【review】
2024-06-20 The archive of the HGPI lecture has been released. 【thinktank】【invited lecture】【archive】
2024-06-19 Lecture at Sophia University. 【university】【lecture】
2024-06-18 Lecture at Osaka Meisei High School.【Junior / Senior High school】【RDD】【study tour】
2024-06-16 Lecture at k-mic. 【university】【lecture】
2024-06-12 Lecture on Research-Based Learning at High School.【Junior / Senior High school】【lecture】
2024-06-10 Japanese version of statement released by Rare Disease International. 【global community】【report】
2024-05-30 Lectured at the 66th Annual Meeting of the Japanese Society of Child Neurology, Seminar organized by the Joint Research Promotion Committee. 【domestic conference】【invited speaker】
2024-05-28 Gave a Lecture at the Japan Pharmaceutical Manufacturers Association. 【JPMA】【invited speaker】
2024-05-23 Spoke at HGPI's "NANBYO Day" Symposium. 【thinktank】【invited speaker】
2024-05-23 The video of the commemorative lecture, "May 23 is NANBYO Day," hosted by Hokkaido Medical Center has been released. 【hospital】【invited speaker】
2024-05-21 Participated in IRDiRC meeting. 【global community】【invited】
2024-05-19 Participated in the JPA Annual General Meeting as a cooperating organization. 【JPA】
2024-05-16 Lectured at an internal seminar of the company. 【company】【invited speaker】
2024-05-16 We held a dialogue session between high school and university students and corporate MR professionals. 【company】【Junior / Senior High school】
【facilitation】
2024-05-16 Presentation at ECRD 2024 conference. 【ECRD】【poster presentation】
2024-05-12 "Let's Learn About Rare and Intractable Diseases: A Gathering of Pediatricians and High School Students" Held. 【hospital】【Junior / Senior High school】
2024-05-07 ASrid released the final survey report on the employment of individuals with rare and chronic diseases. 【all NANBYO】【report】
2024-05-01 【Supported event】HGPI Intractable Disease Day Symposium 【supported】【thinktank】
2024-05-01 【Supported Event】Rare Cancer Community Day. 【supported】【IBD】
2024-04-30 The survey report on patient participation in clinical trials, in which ASrid collaborated, has been published. 【JPMA】【review】
2024-04-27 Published STEP Dialog Vol.2 on the STEP Learning site. 【STEP】【website】
2024-04-26 Appointed as Outreach Partner of ECRD 2024. 【global community】【ECRD】【Steering committee】
2024-04-22 Lectured at an internal seminar of the company. 【company】【invited speaker】
2024-04-22 Gave a lecture at an internal seminar of the company. 【company】【invited speaker】
2024-03-13 Participated in the Sanofi Global Patient Council. 【company】【global community】【invited】
2024-03-09 Presentation at the 15th Annual Meeting of the Japan Clinical Trials Association. 【domestic conference】【invited speaker】
2024-03-08 Exhibited and gave a lecture at the company's internal RDD awareness event. 【company】【Issacs syndrome】【RDD】
2024-03-04 Exhibited and lectured at the company's internal RDD awareness event. 【company】【RDD】
2024-03-01 Visited the House of Councillors Members' Office Building during the RDD JPA event. 【diet member】【RDD】【patient/family】
2024-02-29 An RDD advertisement was published in the Asahi Shimbun 【media】【RDD】
2024-02-29 A full-page advertisement was published in the NIKKEI Shimbun 【media】【RDD】
2024-02-29 A paper has been published in the Rare Disease and Orphan Drugs Journal. 【research paper】
2024-02-29 As part of the RDD Japan event, we illuminated the Tokyo Tower. 【RDD】【patient/family】
2024-02-29 Hosted the RDD Japan event. 【RDD】【patient/family】
2024-02-20 Lectured at the company's internal awareness event for Rare Disease Day. 【company】【RDD】
2024-02-20 Exhibited at the internal awareness event for Rare Disease Day (RDD) . 【company】【RDD】
2024-02-17 The RDD exhibition at Tokyo Tower has begun. 【RDD】【patient/family】
2024-02-15 Exhibited and gave a lecture at the company's internal RDD awareness event. 【company】【RDD】
2024-02-14 An interview article was published in IBD Plus 【media】【RDD】
2024-02-08 Co-hosted the RDD Symposium with Takeda Pharmaceutical Company. 【company】【RDD】【invited speaker】
2024-02-04 Co-hosted the PMDA RDD2024 Symposium with the Japan Pharmaceutical Manufacturers Association. 【company】【RDD】【invited speaker】
2024-02-03 Presentation at the 8th Mitochondrial Disease Research Open Forum. 【research community】【mitochondrial disease】【invited speaker】
2024-02-01 Held the RDD2024 Kickoff Live event. 【RDD】【patient/family】
2024-01-17 Lectured at an internal seminar of a company. 【company】【invited speaker】
Year 2023
2023-12-27 Held an RDD internship for junior and senior high school students. 【Junior / Senior High school】【RDD】【Study tour】
2023-12-26 The third RDD High School Summit was held. 【Junior / Senior High school】【RDD】【summit】
2023-12-20 Held the RDD2024 Sponsor Day. 【company】【RDD】
2023-12-19 Conducted the RDD High School Study Tour (National Institute of Technology, Tsuruoka College). 【Junior / Senior High school】【RDD】【Study tour】
2023-12-18 JRARE regular meeting was held. 【JRARE】【all NANBYO】
2023-12-18 Conducted the RDD High School Study Tour (Sakata Nishi High School). 【Junior / Senior High school】【RDD】【Study tour】
2023-12-15 Participated in the Advisory Board Meeting of the Japan Pharmaceutical Manufacturers Association's Committee for Promoting Collaboration with Patient Groups. 【advisory board】【JPMA】
2023-12-15 GIST Advisors Meeting Report is Now Available. 【advisory board】【GIST】【report】
2023-12-14 Organized a webinar for high school students held on RDD2024.
2023-12-13 Lectured at Pharma Delegates. 【company】【invited speaker】
2023-12-12 Lectured at an elementary school. 【elementary school】
2023-12-11 Lectured and participated in a workshop at a corporate internal seminar. 【company】【workshop】
2023-12-10 Set up an RDD booth at a children's Christmas event. 【elementary school】
2023-12-08 Presentation at the 46th Annual Meeting of the Japanese Society of Pediatric Genetics. 【domestic conference】【invited speaker】
2023-12-07 Presentation at the 39th National NANBYO Center Research Meeting. 【domestic conference】【RDD】【oral presentation】
2023-12-03 Participated as a research collaborator in the Congenital Cerebral White Matter Disorders Research Group meeting and gave a presentation. 【research community】【invited participation】
2023-11-26 Conducted the 4th Kids Doodle Party at Aozora Republic. 【All pediatric NANBYO】【workshop】
2023-11-24 Presentation at the 11th conference for Japan NANBO Medical Network. 【domestic conference】【poster presentation】
2023-11-22 Organized Study tour for RDD high school students (Sakata Nishi High School). 【Junior / Senior High school】【RDD】【Study tour】
2023-11-18 Presentation at the National Forum on Rare and Chronic Diseases 2023 (NANBYO Forum 2023). 【All NANBYO】【report】
2023-11-15 The RDD lecture was conducted for corporation. 【RDD】【Invited speaker】
2023-11-12 RDD lecture was held. 【RDD】【Invited speaker】
2023-11-10 The PhaRMA chair had a dialogue with patient groups. 【All NANBYO】【invited participation】
2023-11-10 Organized a webinar for high school students held on RDD2024.【Junior / Senior High school】【RDD】【Study tour】
2023-11-07 Presentation at the 20th DIA Japan annual meeting. 【domestic conference】【oral presentation】
2023-11-03 Presentation at the 41st Annual Meeting of the Japanese Society for Neurological Therapeutics. 【domestic conference】【FAP】【oral presentation】
2023-10-29 Participated in RDD event at National Institute of Technology, Tsuruoka College. 【Junior / Senior High school】【RDD】【Study tour】
2023-10-28 Organized Study tour for RDD high school students (Osaka Meisei High School). 【Junior / Senior High school】【RDD】【Study tour】
2023-10-22 Organized the XLH Cafe. as part of the STEP Project. 【STEP】【XLH】【facilitation】
2023-10-22 Lectured at Sakata Nishi High School. 【Junior / Senior High school】【RDD】【Study tour】
2023-10-22 Participated in the Campus Fest and visited the RDD booth. 【Junior / Senior High school】【RDD】【Study tour】
2023-10-10 Lectured at National Institute of Technology, Tsuruoka College. 【Junior / Senior High school】【RDD】【Study tour】
2023-10-07 Lectured in a symposium at the 64th Annual Meeting of the Japanese Society for Inherited Metabolism Diseases. 【domestic conference】【oral presentation】【Invited speaker】
2023-10-05 Participated in IRDiRC meeting. 【Global community】【Invited participation】
2023-10-04 Organized a webinar for high school students held on RDD2024. 【Junior / Senior High school】【RDD】【Study tour】
2023-09-29 Lecture at Tottori Seikyo Hospital. 【Hospital】【Invited lecture】
2023-09-28 Discussion with students at Osaka Jogakuin Junior and Senior High School School. 【Junior / Senior High school】【RDD】【Study tour】
2023-09-13 Organized a webinar for high school students held on RDD2024. 【High school】【RDD】【Study tour】
2023-09-12 Lecture at Sakata Nishi High School 【High school】【RDD】【lecture】
2023-09-13 Organized a webinar for high school students held on RDD2023. 【high school】【RDD】【Study tour】
2023-09-12 Lecture at Sakata Nishi High School 【high school】【RDD】【Study tour】
2023-08-29 lecture at the Japanese Association of Children's Hospital and Related Institutions, Nursing Division Directors' Liaison Meeting. 【Pediatric】【Nurse】【Child care】【research】
2023-08-25 Introduced high school students to the history of RDDs. 【high school】【RDD】【Study tour】
2023-08-19 Lecture at an event hosted by high school students. 【high school】【RDD】【Study tour】
2023-08-01 Survey on Trends in Promoting Public and Patient Understanding and Participation in Clinical Research, etc." has been released. 【AMED】【research】
2023-07-31 New content, "STEP Dialogue," is now available on the STEP Learning website. 【STEP】【multi-stakeholder】
2023-07-20 Lecture at Kobe Kaisei junior and high school. 【high school】【RDD】【Study tour】
2023-07-08 Introduced examples of collaboration with academic societies at the board meeting of the Japanese Society of Neurological Therapeutics. 【domestic conference】【invited speech】
2023-07-07 Presentation at a corporate in-house seminar. 【industry】【presentation】
2023-07-05 Discussion with students at Osaka Meisei High School. 【high school】【RDD】【Study tour】
2023-06-27 Participated in the kick-off meeting of "Society for Making Clinical Trials More Accessible to All". 【clinical research】【multi-stakeholder】
2023-06-25 Participated as a support staff at the booth of a patient association at the 5th Annual Meeting of the Japanese Association for Home Care Medicine. 【domestic conference】【Booth exhibit】
2023-06-17 Participated in IRDiRC meeting. 【global researchers community】【invited participation】
2023-06-16 Participated in the general meeting of PPI JAPAN. 【PPI】
2023-06-12 Lecture at Osaka Meisei High School 【high school】【RDD】【Study tour】
2023-06-11 Organized GIST Advisors Meeting. 【GIST】【advisory meeting】【planning and operation】【facilitator】
2023-06-08 Participated in the press conference of the "Society for Making Clinical Trials More Accessible to All". 【clinical trial】【multi-stakeholder】【press conference】
2023-06-02 Presentation at a corporate in-house seminar. 【industry】【presentation】
2023-05-18 An article was published in MIRAI PORT. 【RDD】【industry】【article】
2023-05-10 Presentation at the RESTA seminar. 【industry】【presentation】
2023-04-11 Participated as a facilitator in the corporate internal dialogue program. 【industry】【fascilitator】
2023-04-05 Presentation at an in-house event of a marketing company. 【industry【presentation】
2023-03-21 The 2nd RDD High School Summit was held. 【high school】【RDD】【summit】
2023-03-18 Presentation at RDD medUnet. 【RDD】【presentation】
2023-03-16 Participated in an in-house event organized by a pharmaceutical company. 【industry】【presentation】
2023-03-13 Served as a facilitator at the RDD Hamamatsucho building. 【RDD】【facilitator】【planning and management】
2023-03-06 Participated in RDD Tottori Opinion Exchange. 【RDD】【presentation】
2023-02-25 Held the RDD×WheeLog! collaboration project. 【RDD】【WheeLog】【accessibility map】【planning and management】
2023-02-23 Presentation at RDD Hokkaido. 【RDD】【industry】【presentation】
2023-02-22 Exhibited at RDD internal awareness event for a pharmaceutical company. 【RDD】【industry】
2023-02-21 Exhibited at RDD internal awareness event for a pharmaceutical company. 【RDD】【industry】【presentation】
2023-02-16 RDD Press Seminar was co-hosted with Pfizer. 【RDD】【industry】【facilitator】
2023-02-15 Exhibited at RDD internal awareness event for a pharmaceutical company. 【RDD】【industry】
2023-02-12 RDD Symposium was co-hosted with Takeda Pharmaceutical Co., Ltd. 【RDD】【industry】【facilitator】【planning and management】
2023-02-07 Presentation at the 15th ICORD conference 【international conference】【invited presentation】
2023-02-05 Presentation at RDD Tohoku University. 【RDD】【university】【presentation】
2023-01-30 Served as a facilitator at the RDD PPI. 【RDD】【PPI】【facilitator】
2023-01-24 Presentation at a corporate in-house seminar. 【industry】【presentation】
2023-01-20 Served as a facilitator at the 7th PPI Workshop "Minna no Radio PPI". 【PPI】【facilitator】
2023-01-12 Presentation at the town hall hosted by a pharmaceutical company. 【industry】【presentation】
Year 2022
2022-12-25 set up an RDD booth at "Hello! Henteko Town 2022". 【RDD】【booth exhibit】
2022-12-24 Held an RDD exhibition session at the Pharmaceutical company's event 【RDD】【industry】
2022-12-23 Organized a webinar for high school students held on RDD2023. 【high school】【RDD】【Study tour】
2022-12-22 Organized a webinar for high school students held on RDD2023. 【high school】【RDD】【Study tour】
2022-12-21 Organized a webinar for high school students held on RDD2023. 【high school】【RDD】【Study tour】
2022-12-21 Contributed a comment to an introduction article about corporate patient advocacy activities. 【article】
2022-12-20 Organized a webinar for high school students held on RDD2023. 【high school】【RDD】【Study tour】
2022-12-16 Lecture at Sakatanishi high school. 【high school】【RDD】【Study tour】
2022-12-15 Organized Study tour for RDD high school students (National Institute of Technology, Tsuruoka College). high school】【RDD】【Study tour】
2022-12-12 Presentation at the Pharmaceutical company's Patient Day event. 【industry】【planning and management】
2022-12-06 ASrid Cooperated in a dialogue project hosted by a company. 【industry】【planning and management】
2022-12-02 Held a RDD 2023 Sponsor Day. 【RDD】【industry】
2022-11-30 Participated in IRDiRC meeting 【global researchers community】【invited participation】
2022-11-30 Served as a facilitator at the 40th Pharmaceutical Industry Patient Group Seminar. 【industry community】【facilitator】
2022-11-26 Presented several domestic cases at the APARDO Conference 2022 【global researchers community】【invited presentation】
2022-11-26 Presentation at the 33th conference for the Japanese Association for Human Auxology 【domestic conference】【oral presentation】
2022-11-22 Organized Study tour for RDD high school students (Kobe Kaisei high school) 【high school】【RDD】【Study tour】
2022-11-18 Presentation at the 10th conference for Japan NANBO Medical Network (educational session) 【domestic conference】【invited presentation】
2022-11-18 Presentation at the 10th conference for Japan NANBO Medical Network【domestic conference】【oral presentation】
2022-11-07 Participated in Annual meeting of Pelizaeus-Merzbacher disease and related disorders research group as a research collaborator 【research group】【invited participation】
2022-11-04 Participated in the patient advisory meeting 【industry】【panel discussion】
2022-10-29 Organized Study tour for RDD high school students (Kobe Kaisei high school) 【high school】【RDD】【Study tour】
2022-10-26 Participated in an exchange of opinions meeting between PhRMA and patient groups. 【industry community】【discussion】
2022-10-23 Organized the XLH Cafe. as part of the STEP Project. 【STEP】【XLH】【planning and management】【facilitator】
2022-10-11 Participated in the 19th DIA Japan annual meeting 2022 as a session panelist 【industry community】【panel discussion】
2022-10-04 Lecture at National Institute of Technology, Tsuruoka College. 【high school】【RDD】【Study tour】
2022-09-30 Lecture at the 3rd Academia Clinical Development Seminar. 【university】【invited presentation】
2022-09-13 Lecture at the 3rd Biobank Forum 【University】【biobank】【presentation】
2022-09-11 GIST Advisors Meeting Held. 【GIST】【advisory meeting】【planning and operation】【facilitator】
2022-09-03 Lecture at Kobe Kaisei junior and high school 【high school】【RDD】【presentation】
2022-09-02 Kids Doodle Party at the Aozora Republic (October 9, Hokuto City, Yamanashi) 【All NANBYO】【pediatric】【workshop】【art museum】
2022-08-20 RDD High School Initiatives Presented with High School Students at the Hyper Interdisciplinary Conference. 【domestic conference】【high school】【RDD】【poster presentation】
2022-07-31 The First RDD Japan High School Summit was held. 【high school】【RDD】【summit】
2022-07-07 Discussion with students at Osaka Meisei High School 【high school】【RDD】【Study tour】
2022-07-01 Presentation at ECRD 2020 conference (2 posters) 【international conference】【poster presentation】
2022-06-30 [Press Release] STEP LEARNING Website, an Information Portal Site Responding to the "Want to Know" of People with Rare and Intractable Diseases, is Now Open. 【STEP】【website】
2022-06-25 Lecture at the 69th Annual Meeting of the Japanese Society of Child Health 【domestic conference】【presentation】
2022-06-25 [Press Release] "T-Style Read Aloud Instructional App for web" for teaching and supporting dyslexia is now available. 【dislexia】【medical institution】【website】
2022-06-15 Participated in the RDI membership meeting 【global patient community】【invited participation】
2022-06-13 Lecture at Osaka Meisei High School 【high school】【RDD】【presentation】
2022-06-04 Organized the joint art exhibition and interactive art appreciation workshop with the 64th Annual Meeting of the Japanese Society for Child Neurology. 【domestic conference】【workshop】
2022-05-25 Lectured at the Japan Pharmaceutical Manufacturers Association, Committee for Promotion of Patient Group Collaboration. 【industry community】【presentation】
2022-05-11 【Press Release】"Ne, Asobo," an Information Portal Site for Play for Severely Mentally and Physically Handicapped Children and Children in Medical Care, is Released 【children with medical care】【website】
2022-04-22 Article published in Rare Disease and Orphan Drugs Journal. 【global patient community】【research article】
2022-03-30 Participated as a panelist at the PhRMA PAC Roundtable. 【industry community】【panel discussion】
2022-03-29 RDD Tokyo extravaganza: Dialogue planned and conducted.【 RDD】【university】
2022-03-28 Participated in Webinar "Radio PPI" at the 6th Patient and Public Involvement Study Group 【PPI】【invited participation】
2022-03-24 The Japanese text of the resolution adopted by the UN General Assembly on December 16, 2021, is now available. 【UN】【report】
2022-03-23 Participated in the evaluation committee on the JPA support program. 【patient association】【report】
2022-03-22 Article in AMED Public Relations Magazine.【newspapers, magazines, media】【article】
2022-03-20 APEC ACTION PLAN ON RARE DISEASES is now available in Japanese 【APEC】【report】
2022-03-14 Lectured at a corporate-sponsored seminar. 【industry】【presentation】
2022-03-09 Participated in IRDiRC meeting 【global research community】【invited participation】
2022-03-09 Lectured at RDD Hamamatsucho Building 【RDD】【presentation】
2022-03-07 Lecture at RDD Tottori 【RDD】【regional community】【presentation】
2022-02-28 Supported Illumina Corporation's RDD Global Campaign. 【RDD】
2022-02-14 RDD Press Seminar was co-hosted with Pfizer 【industry】【RDD】【planning and operation】
2022-02-06 RDD Symposium was co-hosted with Takeda Pharmaceutical Co., Ltd. 【industry】【planning and operation】【RDD】【facilitator】
2022-02-06 Oral presentation at the 36th Society of NANBYO Centers
Year 2021
2021-12-24 Organized a webinar for high school students held on RDD2022 【high school】【RDD】【planning and operation】
2021-12-24 ASrid Cooperated in a dialogue project hosted by a company. 【industry】【planning and operation】
2021-12-24 【Press Release】Announcement of STEP (Strategic Translational Action for Empowering Patients) Establishment, Information Community for Rare Disease Stakeholders【All NANBYO】【STEP】
2021-12-21 第80回日本公衆衛生学会総会にて研究成果を発表しました 【high school】【planning and operation】
2021-12-21 Organized a webinar for high school students held on RDD2022 【high school】【RDD】【planning and operation】
2021-12-20 Organized a webinar for high school students held on RDD2022【high school】【RDD】【planning and operation】
2021-12-16 Organized Study tour for RDD high school students (Sakata-Nishi high school) 【high school】【RDD】【Study tour】
2021-12-15 Organized a webinar for high school students held on RDD 【high school】【RDD】【planning and operation】
2021-11-19 Presentation at the 9th conference for Japan NANBO Medical Network 【domestic conference】【children with medical care】【presentation award】
2021-11-13 Organized Study tour for RDD high school students (Kakogawa Minami high school) 【high school】【RDD】【Study tour】
2021-11-07 Report on the Results of the Questionnaire Survey on Employment of People with Intractable and Chronic Diseases (First Report)" has been released【All NANBYO】【labor】【report】
2021-11-06 Organized as an executive committee organization at the Japan NANBYO Patient and Family Conference 2021 【All NANBYO】【planning and operation】
2021-11-05 An article was published in the "Community Care" 【industry journal】【article】
2021-11-04 Organized Study tour for RDD high school students (Kobe Kaisei high school) 【high school】【RDD】【Study tour】
2021-11-01 Presentation at PPI JAPAN Dialogue Meeting【PPI】【presentation】
2021-10-29 Presentation at the 39th Annual Meeting of the Japanese Society of Neurological Therapeutics 【domestic conference】【presentation】
2021-10-25 Session Chair/Moderator for the 18th DIA Japan annual meeting 2021 【industry community】【moderator】【session chair】
2021-10-24 Presentation and attended the panel discussion at the Global Patient Advocacy Leadership Summit: Asia Pacific Regional Session 【international conference】【panelist】
2021-10-22 Lecture at Sakatanishi high school 【high school】【presentation】
2021-10-06 Facilitator for a company-sponsored dialogue project 【industry】【facilitator】
2021-10-02 Online poster presentation at the 13th conference for the Japanese Association of Health Communication 【domestic conference】【COVID19】【oral presentation】
2021-09-21 Lecture at Kakogawa-Minami High School 【high school】【presentation】
2021-09-15 RDD High School Study tour was held, cohosted with Kobe Kaisei high school 【high school】【RDD】【Study tour】
2021-09-11 RDD High School Study tour was held, cohosted with Osaka Meisei high school 【high school】【RDD】【Study tour】
2021-08-19 Have Organized a Workshop on Play and Care for Children with Severe Physical and Mental Disabilities and Children in Medical Care for 3 months 【children with medical care】【play】【workshop】【planning and operation】
2021-08-13 Organized a Webinar on Play and Care for Children with Severe Physical and Mental Disabilities and Children in Medical Care 【children with medical care】【play】【planning and operation】
2021-08-07 Discussion with students at Kobe Kaisei junior and high school 【high school】【RDD】【Study tour】
2021-08-05 Organized Study tour for RDD high school students (Osaka Meisei Gakuen)【high school】【RDD】【Study tour】
2021-07-28 ASrid's activities were introduced in "Genetic Disorders Plus". 【【newspapers, magazines, media】】【article】
2021-07-27 Discussion with students at Osaka Meisei High School 【high school】【RDD】【Study tour】
2021-07-22 Participated in Annual meeting of Pelizaeus-Merzbacher disease and related disorders research group as a research collaborator 【resarach community】【Pelizaeus-Merzbacher disease】
2021-07-17 Lecture at Kobe Kaisei junior and high school 【high school】【RDD】【presentation】
2021-07-16 Presentation at the 3rd DIA Japan Patient Engagement Webinar 【industry community】【presentation】
2021-07-08 Lecture at Osaka Meisei High School 【high school】【RDD】【presentation】
2021-07-01 The final version of the "Survey on the Impact of Novel Coronavirus Infection (COVID-19) on Patient groups/associations with Rare and Intractable Diseases" conducted by ASrid is now available. 【COVID19】【All NANBYO】【domestic trend】【report】
2021-06-30 Online Roundtable Discussion on "Research on the Impact of COVID-19 on Patients and Families with Rare and Incurable Diseases" is now available. 【COVID19】【All NANBYO】【domestic trend】【symposium】
2021-06-24 The final version of the "Survey on the Impact of Novel Coronavirus Infection (COVID-19) on Patients and Families with Rare and Intractable Diseases" conducted by ASrid is now available. 【COVID19】【All NANBYO】【domestic trend】【report】
2021-06-08 A comprehensive patient exploratory survey on Glycogenic Disease Type 1a has been conducted and a list of national medical institutions has been compiled.【Glycogenosis type 1a】【exploratory study】
2021-06-02 Presentation at the Pfizer in-department seminar 【industry】【presentation】
2021-05-26 Participated in the RDI membership meeting
2021-05-07 The preliminary version of the "Survey on the Impact of Novel Coronavirus Infection (COVID-19) on Patients and Families with Rare and Intractable Diseases" conducted by ASrid is now available. 【COVID19】【All NANBYO】【domestic trend】【report】
2021-04-30 Participated in RDD Global Steering Committee 【RDD】【invited participation】
2021-04-23 Presentation at the 2nd DIA Japan Patient Engagement Webinar 【industry community】【presentation】
2021-04-04 Part of the COVID19 survey conducted by ASrid was published in a weekly magazine. 【newspapers, magazines, media】【article】
2021-03-29 Participate in the working group of the Inclusive Academic Project (Inclusive Design in Science Education Environment). 【university】【invited participation】
2021-03-28 Presentation at the 5th Annual Meeting of HAE Forum 【HAE】【domestic conference】【presentation】
2021-03-26 Publish a report; "The contributions of the intermediate organization -MHLW’s "daytime activity support” to revise the fees for welfare service for persons with disabilities" 【multi-stakeholders】【children with medical care】【report】
2021-03-21 Review meeting with high school students who held RDD2021 【high school】【RDD】【planning and operation】
2021-03-10 Lecture at RDD Hamamatsucho-Building.【 RDD】【presentation】
2021-03-07 Lecture at RDD Telemedicine.【 RDD】【presentation】
2021-02-28 Lecture at RDD Tottori.【regional community】【univerisity】【RDD】【presentation】
2021-02-16 RDD Press Seminar was co-hosted with Pfizer 【industry】【RDD】【planning and operation】
2021-02-14 RDD Symposium was co-hosted with Takeda Pharmaceutical Co., Ltd. 【industry】【RDD】【planning and operation】
2021-02-11 Presentation at the 24th JTTA Annual Academic Conference 【domestic conference】【presentation】
2021-02-09 Participated in the APARDO AGM【asia-pacific patient community】【invited participation】
2021-01-24 Participated in the patient advisory meeting 【industry】【panelist】
2021-01-23 Presentation at the Mitochondrial Disease Research Open Forum 【research community】【presentation】
2021-01-15 Conducted a study tour for high school students, for the purpose of holding RDD at the high school 【high school】【RDD】【planning and operation】
Year 2020
2020-12-22 Conducted a study tour for high school students, for the purpose of holding RDD at the high school 【high school】【RDD】【planning and operation】
2020-12-20 Participated in Pelizaeus-Merzbacher disease and related disorders research seminar as a research collaborator 【research community】【Pelizaeus-Merzbacher disease】
2020-12-15 Webinar was held with high school students hosting RDD. 【high school】【RDD】【planning and operation】
2020-12-13 Conducted a study tour for high school students, for the purpose of holding RDD at the high school 【high school】【RDD】【planning and operation】
2020-12-09 Presentation at the APARDO Conference 2020 【international conference】【presentation】
2020-12-06 Participated in the patient advisory meeting 【industry】【panelist】
2020-12-04 Presentation at the 2nd Asia Pacific Patients Congress【international conference】【presentation】
2020-11-29 An article was published in the "Jikkenigaku" (Journal of Experimental Medicine). 【newspapers, magazines, media】【寄稿文】
2020-11-23 Invited to join the Duke-NUS Patient Engagement Roundtable 2020 【international conference】【invited participation】
2020-11-18 Organized a webinar for high school students held on RDD 【high school】【RDD】【planning and operation】
2020-11-17 Organized a webinar for high school students held on RDD 【high school】【RDD】【planning and operation】
2020-11-11 Organized a webinar for high school students held on RDD【high school】【RDD】【planning and operation】
2020-11-10 Organized a webinar for high school students held on RDD 【high school】【RDD】【planning and operation】
2020-11-09 Participated as a panelist at the 17th DIA Japan annual meeting 2020 【industry community】【panelist】
2020-11-09 Presentation at the 17th DIA Japan annual meeting 2020 【industry community】【presentation】
2020-11-07 The report about COVID-19 prepared by ASrid was featured on NHK News 【newspapers, magazines, media】【news】
2020-11-07 Organized as an executive committee organization at the Japan NANBYO Patient and Family Conference 2020 【All NANBYO】【planning and operation】
2020-11-07 Survey of Patients and Families with COVID-19 Infections: Preliminary Report is now available 【COVID19】【All NANBYO】【domestic trend】【report】
2020-11-01 Presentation at the 35th the Japan Society for Research Policy and Innovation Management. 【univerisity】【domestic conference】【oral presentation】
2020-10-28 Invited lecture at Kakogawa−Minami High School【high school】【RDD】【presentation】
2020-10-13 A Commentary was published in the Japan Society of Clinical Trials and Research 【domestic research journal】【article】
2020-10-08 Presentation at the Sanofi JPAC Townhall meeting 【industry】【presentation】
2020-10-06 Presentation at the Health Policy Academy, organized by HGPI【think tank】【presentation】
2020-10-02 Participated in IRDiRC annual meeting 【global research community】【invited participation】
2020-09-28 Presentation and attended the panel discussion at the PPI Japan Study group 【PPI】【presentation】
2020-09-10 Presentation and attended the panel discussion at the HMIC 2020 Conference 【industry community】【presentation】
2020-09-10 Invited to join the ISPOR Patient Representatives Roundtable– Asia-Pacific【international conference】【invited participation】
2020-08-28 Presentation at the 1st DIA Japan Patient Engagement Webinar 【industry community】【presentation】
2020-08-28 Presentation at World Orphan Drug Congress USA 2020 【international conference】【presentation】
2020-08-21 An introductory article on ASrid has been published. 【newspapers, magazines, media】【article】
2020-08-19 Recommendations from overseas organizations (RDI and EURORDIS) related to COVID-19 have been updated. 【COVID19】【All NANBYO】【global trend】
2020-08-07 The research paper was published in the Journal of Health Sciences 【JRARE】【research paper】
2020-08-04 An introductory article on ASrid has been published. 【newspapers, magazines, media】【article】
2020-07-20 Invited lecture at Osaka Meisei High School 【high school】【RDD】【presentation】
2020-07-09 Invited lecture at Study Group Meeting 【industry community】【presentation】
2020-07-01 Invited lecture at Annual Meeting of the Japanese Society of Toxicology 【domestic conference】【presentation】
2020-06-29 Participated the WHO Focus Group Discussion 【WHO】【invited participation】
2020-06-17 The interview article was posted on the NCD Alliance Japan website 【newspapers, magazines, media】【think tank】【article】
2020-05-29 Preliminary results of the survey of "A study on the QOL of children under medical care and their families in a medical short-term care facility” are now available 【children with medical care】【QOL】【research】
2020-05-15 Presentation at ECRD 2020 conference (3 posters) 【Distal Myopathy】【RDD】【researcher-patient】【univerisity】【international conference】【poster presentation】【Selected poster】
2020-05-11 Recommendations from overseas organizations (NORD and EURORDIS) related to COVID-19 are summarized. 【COVID19】【All NANBYO】【global trend】
2020-05-10 The manuscript was published in the Gene Medicine MOOK No. 35 【newspapers, magazines, media】【Mitcondrial disease】【invited article】
2020-05-04 The Economist re has been added to the "International Reports on NANBYO (Rare and Intractable Diseases)" page 【newspapers, magazines, media】【article】
2020-03-14 Participated in IRDiRC Web meeting 【global research community】【invited participation】
2020-02-28 Presentation at Takeda Pharmaceutical Company Limited 【industry】【RDD】【presentation】
2020-02-18 Presentation at RDD Hamamatsucho-Building 【RDD】【presentation】
2020-02-14 Participated in a panel session on the press seminar hosted by Kyowa Kirin Co., Ltd. 【industry】【panelist】
2020-02-13 Presentation at MICIN, Inc 【industry】【RDD】【presentation】
2020-02-13 Lecture at Sagami Women's University Junior High School 【junior high school】【presentation】
2020-02-04 Presentation at RDD2020 press seminar hosted by Pfizer 【industry】【RDD】【presentation】
2020-02-01 Moderating RDD seminar at Takeda Pharmaceutical Company Limited 【industry】【moderator】
2020-01-30 Presentation at Amicus Therapeutics, Inc. 【industry】【presentation】
Year 2019
2019-12-22 Participated in pre-campaign of RDD Osaka Meisei Gakuen 【high school】【invited participation】
2019-12-21 Corporated with an RDD charity golf competition 【industry】【charity competition】
2019-12-12 Held an RDD 2020 Sponsor Day 【industry】【networking】
2019-12-05 Participated in the pre-campaign of RDD Hamamatsucho building 【RDD】【social awareness campaign】
2019-11-21 Participated in IRDiRC Consortium Assembly Meeting 【global research community】【invited participation】
2019-11-16 Invited to a dinner at the Embassy of the United States 【patient group】【domestic conference】【oral presentation】
2019-11-13 Presentation at IAPO Asia-Pacific Patients Congress in Taiwan【global research community】【presentation】
2019-11-12 Booth exhibition at 16th DIA Japan annual meeting 2019 【industry community】【exhibition】
2019-11-09 Organized an exhibition session at the Japan NANBYO Patient and Family Conference 2019 【All NANBYO】【exhibition】
2019-11-01 Presentation at Nobelpharma Co., Ltd. 【industry】【presentation】
2019-10-19 Presentation at APARDO Summit 2019 in Taiwan 【global patient community】【presentation】
2019-10-09 Presentation at CSL Behring Inc. 【industry】【presentation】
2019-10-05 Held "Doodle Kids Party" at the Aozora Republic 【All NANBYO】【pediatric】【workshop】【art museum】
2019-09-24 Conducted a study tour for high school students, for the purpose of holding RDD at the high school 【high school】【RDD】【Study tour】
2019-09-21 Presentation at 8th China Rare Disease Summit in China 【international conference】【presentation】
2019-09-15 Planed and acted as the chairperson of an extension lecture on the 19th Conference on CRC and Clinical Trials 【international conference】【public lecture】【planning and operation】
2019-09-14 Participated in the NCD Alliance Japan workshop【think tank】【invited participation】
2019-09-14 Moderating a symposium at the 19th Conference on CRC and Clinical Trials 【international conference】【session chair】
2019-08-22 Participated in the first working group about inclusive design construction in science education environment 【univerisity】【invited participation】
2019-08-01 Lectured on NANBYO for elementary school students and parents at Peptide Dream Co. 【industry】【presentation】
2019-07-28 Participated in the NCD Alliance Japan workshop 【think tank】【invited participation】
2019-07-27 Organized ODOD2019 workshop 【multi-stakeholders】【workshop】
2019-07-24 Participated in PPI Consortium in Japan launch meeting, as an initial member 【PPI】【planning and operation】
2019-07-19 Lecture at Kobe Kaisei junior and high school 【high school】【RDD】【presentation】
2019-07-13 Participated in Pelizaeus-Merzbacher disease and related disorders research seminar as a research collaborator 【reeearch community】【Pelizaeus-Merzbacher disease】
2019-07-01 Patient and Public Involvement Consortium in Japan was established 【PPI】【planning and operation】
2019-06-17 Lecture at Osaka Meisei High School 【high school】【RDD】【presentation】
2019-05-02 Facilitated the group discussion at the ICOSEP Annual Membership Meeting 2019 【international conference】【facilitator】
2019-04-12 Presentation at World Orphan Drug Congress USA 2019 【international conference】【presentation】
2019-04-11 Patient and family talk session at RDD Tokyo was featured in Medical Note 【newspapers, magazines, media】【article】
2019-03-16 Presentation at RDD University of Tokyo, Graduate School of Pharmaceutical Sciences 【univerisity】【RDD】【presentation】
2019-02-27 RDD2019 Press Seminar was held 【industry】【RDD】【press seminar】
2019-02-19 RDD Japan was introduced at The Chunichi Shimbun 【【newspapers, magazines, media】【RDD】【article】
2019-02-17 Presentation at RDD University of Tokyo, Graduate School of Pharmaceutical Sciences 【RDD】【univerisity】【presentation】
2019-02-17 Presentation at Rare Disease Informatics 2019 meeting 【research community】【presentation】
2019-02-16 Participated in RDD Meisei High School 【high school】【RDD】【presentation】
2019-02-16 Lecture at Mitochondrial Disease Research Open Forum.【research community】【presentation】
2019-02-08 Presentation at RDD Hamamatsucho-Building 【RDD】【presentation】
2019-02-01 "Rare diseases feature" was released on CareNet.com 【newspapers, magazines, media】【article】
2019-01-19 Presentation at RDD JCR Pharma Ashiya Public Lecture 【industry】【RDD】【presentation】
2019-01-04 An article on RDD Japan was published in Mainichi Newspaper 【newspapers, magazines, media】【article】
Year 2018
2018-12-15 Oral presentation at the Smips (Society for management of intellectual properties)【research community】【presentation】
2018-12-11 RDD2018 Sponsor Day was held 【industry】【RDD】【networking】
2018-12-06 Participated in the 13th IRDiRC Consortium Assembly Meeting 【globalresearch community】【article】
2018-11-11 Booth exhibition was held at the 15th DIA Japan annual meeting 【industry community】【exhibition】
2018-11-07 Oral presentation at the Pharma Delegates Special Seminar 【industry community】【presentation】
2018-11-04 Oral presentations at the 30th Society of NANBYO Centers 【domestic conference】【oral presentation】
2018-11-02 Conducted a study tour for high school students, for the purpose of holding RDD at the high school【high school】【RDD】【Study tour】
2018-10-28 Oral Presentation at the Open Lecture for Citizen, 12th International BMP Conference 【international conference】【FOP】【public lecture】【presentation】
2018-10-03 Contributed a report on Japan's efforts to the UDNI Newsletter 【globalresearch community】【article】
2018-09-20 Yukiko Nishimura had a presentation at the ICORD 2018 【international conference】【presentation】
2018-09-18 Lecture at Norwegian National Advisory Unit on Rare Disorders【univerisity】【presentation】
2018-07-28 ASrid organized ODOD2018 workshop 【muilti-stakeholder】【workshop】
2018-07-12 Yukiko Nishimura gave a lecture at the Patient Forum organized by Eli Lilly Japan K.K. 【industry】【presentation】
2018-07-09 ASrid gave a lecture at Osaka Meisei High School 【high school】【RDD】【presentation】
2018-06-15 Yukiko Nishimura participated in a panel session on the summit organized by MetLife 【industry】【presentation】
2018-06-01 ASrid launched the Oral History project for leaders in the NANBYO patient associations 【univerisity】【oral history】
2018-05-12 Yukiko Nishimura and Shun Emoto had a poster presentation at the ECRD 2018, respectively 【international conference】【genome ELSI】【poster presentation】
2018-04-26 Yukiko Nishimura gave a presentation at World Orphan Drug Congress USA 2018 【international conference】【presentation】
2018-04-19 Shun Emoto facilitated the group discussion at the ICOSEP Annual Membership Meeting 2018 【international conference】【facilitator】
2018-04-15 ASrid's activity was posted in the Journal of Industry-Academia-Government collaboration (published by Japan Science and Technology Agency) 【newspapers, magazines, media】【article】
2018-03-14 Yukiko Nishimura elected as Vice Chair of the Patient Advocacy Constituent Committee, IRDiRC 【global research community】
2018-02-25 RDD Japan was introduced at Medical Tribune 【newspapers, magazines, media】【article】
2018-02-20 RDD Japan was introduced at Heart Net Website 【newspapers, magazines, media】【RDD】【article】
2018-02-20 RDD Japan was introduced at Heart Net TV, NHK E-tele 【newspapers, magazines, media】【RDD】【TV】
2018-02-10 Shun Emote and Yukiko Nishimura had a poster presentation at the Society of NANBYO Centers, respectively 【university】【AMED】【genome ELSI】【domestic conference】【oral presentation】
2018-02-07 Shun Emoto had a presentation at an event organized by NPO Citizen's Science Initiative Japan 【citizen's NPO】【presentation】
2018-02-05 Yukiko Nishimura had a presentation at RDD CMIC Holdings, Co., Ltd. 【industry】【presentation】
2018-02-01 RDD2018 Press Seminar was held 【industry】【RDD】【press seminar】
2018-01-31 Yukiko Nishimura gave a presentation at the 3rd committee for "Survey on Patient and Public Involvement in Clinical Research etc.”, organized by AMED 【AMED】【presentation】
2018-01-21 ASrid’s Activity was introduced to the Mainichi Newspaper 【newspapers, magazines, media】【article】
Year 2017
2017-12-12 RDD Sponsor Day, the first attempt at RDD Japan, was held. 【industry】【RDD】【networking】
2017-12-09 ASrid organized ELSI Workshop Vol.4 【AMED】【genome ELSI】【workshop】
2017-11-18 ASrid organized ELSI Workshop Vol.3 【AMED】【genome ELSI】【workshop】
2017-11-14 ASrid put up the exhibition booth at 14th DIA Japan annual meeting 【industry cmmunity】【exhibition】
2017-11-09 Yukiko Nishimura had a presentation at JCR Pharmaceutical Co., Ltd. 【industry】【presentation】
2017-11-05 Shun Emoto had a presentation at the 28th Conference of the Society of NANBYO Centers 【domestic conference】【oral presentation】
2017-10-29 Shun Emoto had a presentation at the 32nd Japan Society for Research Policy and Innovation Management. 【univerisity】【domestic conference】【oral presentation】
2017-10-25 J-RARE was featured in Nikkei Medical Journal 【newspapers, magazines, media】【article】
2017-10-14 ASrid organized ELSI Workshop Vol.2 【AMED】【genome ELSI】【workshop】
2017-09-20 Shun Emoto had a presentation at Novo Nordisk, Inc. 【industry】【presentation】
2017-09-16 ASrid organized ELSI Workshop Vol.1 【AMED】【genome ELSI】【workshop】
2017-09-14 An article of Rare Disease Day was published in the Nihon Keizai Shimbun. 【newspapers, magazines, media】【article】
2017-09-09 Yukiko Nishimura had a presentation at the ICORD 【international conference】【presentation】
2017-09-09 Shun Emote and Yukiko Nishimura had a poster presentation at the ICORD 2017, respectively. 【international conference】【poster presentation】
2017-09-02 Yukiko Nishimura had a presentation at the 17th Conference on CRC and Clinical Trials 2017 in Nagoya 【domestic conference】【oral presentation】
2017-08-28 Lecture at Shire Japan K.K. 【industry】【presentation】
2017-07-22 ASrid organized ODOD2017 workshop【multi-stakeholder】【workshop】
2017-07-17 ASrid organized ELSI Workshop as a kickoff meeting 【AMED】【genome ELSI】【workshop】
2017-06-05 Yukiko Nishimura had a presentation as a lecturer at the employee workshop at Nagahama Zeroji Club. 【citizen's NPO】【workshop】
2017-04-21 Yukiko Nishimura gave a presentation at World Orphan Drug Congress 2017 【international conference】【presentation】
2017-04-15 An article of ASrid was published in the information magazine "Manekineko" organized by VHO-net【newspapers, magazines, media】【article】
2017-04-11 Yukiko Nishimura gave a presentation at GLOBIS MBA School 【MBA】【presentation】
2017-03-19 ASrid hold a debrief meeting (FY15-16) about the J-RARE project (funded by MHLW), Yaesu, Tokyo 【MHLW funded research】【JRARE】
2017-03-11 Shun Emoto had a presentation at the 5th ICOSEP Annual Meeting 【international conference】【presentation】
2017-02-25 Yukiko Nishimura had a presentation about J-RARE at the Mitochondrial diseases patients forum organized by the AMED MITO research group. 【Mitcondrial disease】【MO bank】【presentation】
2017-02-09 Yukiko Nishimura had a presentation at the 3rd IRDiRC conference 【global research community】【presentation】
2017-02-04 Kunihiro Nishimura had a presentation about the introduction of ASrid, Rare Disease Day, and J-RARE at the training workshop organized by Tokyo Rare and Intractable Diseases Support Center.【Toky metropolitan NANBYO support center】【RDD】【JRARE】【presentation】
Year 2016
2016-12-20 ASrid was offered a subsidy from AMED research grant 【AMED】【genome ELSI】
2016-11-19 Yukiko Nishimura facilitated the workgroup discussion at RD Asia Conference 2016 【international conference】【facilitator】
2016-11-15 Rare Disease Day Japan Secretariat office (inside NPO ASrid) put up the exhibition booth, and also moderated the chat session at the 13th DIA Japan annual meeting. 【industry community】【RDD】【moderator】
2016-11-11 Yukiko Nishimura gave a presentation at the inaugural meeting of, the NGO Committee for Rare Diseases 【UN NGO】【invited participation】【oral presentation】
2016-11-05 Go Yoshizawa and Yukiko Nishimura gave a presentation at the Japan Society for Research Policy and Innovation Management 【大学】【国内学会】【oral presentation】
2016-10-08 Yukiko Nishimura gave a presentation at the REASE working group, University of Tokyo【univerisity】【JRARE】
2016-08-28 ASrid organized the J-RARE research meeting 【MHLW funded research】【JRARE】
2016-08-26 Yukiko Nishimura gave a presentation at the Department of Research and Development of Next Generation Medicine, Kyushu University【univerisity】【presentation】
2016-07-01 ASrid was offered a subsidy from MHLW research grant【MHLW funded research】【JRARE】
2016-04-24 Yukiko Nishimura participated in the panel discussion, World OD Congress 2016 【international conference】【panel discussion】